Living With Fibromyalgia - Online Support Group

Skin problems

I’ve been gone from this site for a long time and I’ve missed the support and kindness of people who know what you’re going through and are always there for you. I’ve been experiencing an issue that has my doctors scratching their heads. Has anyone else had unexplained hives that cause itching and are spread over the whole body. Treatment with steroids has not seemed to alleviate the problem. I’ve always had a sensitivity to sulfa drugs but haven’t been on any recently. I do take medication for Afib, a blood thinner and acid reflux meds. The doctors changed my necessary meds but it hasn’t helped relieve the rashes. I did have a biopsy done 6 months ago on another rash and they said they felt it was medication related. That rash disappeared after a couple of weeks. This one has been here for a month. My GP always just says I’m weird and doesn’t have much knowledge about Fibromyalgia. Seems like he thinks it’s all in my head. :roll_eyes:. Has anyone one else had this problem and any suggestions will be greatly appreciated!

I’ve had many rashes over the years. Do you have any other diagnoses besides the FM? I also have Undifferentiated Connective Tissue Disease which is autoimmune (and sort of “Lupus Like”). Anyway, I am a highly allergic person, and can get hives from almost anything (dust, sunlight, and many medications). Have you tried an allergist? They might be able to pinpoint exactly what’s causing this. Some allergists can even test for med allergies if needed. Anyway good luck.

Hi thanks for responding! I have seen an allergist but she doesn’t test for meds. She has referred me to someone else but she isn’t sure they do meds either. I have to see my dermatologist next week and hope she can help. I was diagnosed a couple of years ago with Lichen Planus but this is different. Change in heart meds hasn’t made any difference either. I’m just tired of itching all over. I know that the fibromyalgia can cause a lot of reactions to meds and other sensitivities but this is getting old. 2 doses of steroids hasn’t helped either. Thanks again for your support.

Do you have pets? Is your house insulated? Have you hide your house tested for mode or meal do that may be airborne? I went to an allergist and he did 58 scratch tests and they all came back negative I went to another allergist and she did 2 sets of blood tests and they all came back negative which is a funny thing because I am allergic to self a drugs and I am allergic to mushrooms and it’s a proven fact at any rate I have more than just one thing but I asked O have fibromyalgia I also know that with extensive contact with airborne you’re in or airborne mold makes me extremely itchy and bugs the crapped out on me and I have to go outside and get out of the house and nothing helps it but leaving I would suggest you go see a rheumatologist for your fibromyalgia. What Are you taking for your fiber my algea?

I have fibromyalgia and recurring vasculitis. The vasculitis began a few years ago as what I thought was an allergic reaction with a small rash on one arm, then each time it came back it got worse - eventually becoming typical to the illness where the rash would turn to something like black scabs - again I have been quite lucky that it was only a small part of my leg that got like this. Again, just like fibro it seems to help to avoid ALL sugar even if there is a tiny amount in something and all simple Carbs such as rice, bread, potatoes and pasta - meat, (been ok with well cooked lentils too) salad and colourful vegetables - eat some sauerkraut or kimchee too - its helps the gut bacteria which in turn helps reduce the fibro pain - well that’s what I have done. Difficult at Christmas time, but it might be easier now it’s the new year. Exercise too - if you don’t do much start with walking - its as good as jogging really - just have to do a little more of it. Hope it helps.

I have had fibro for 20 years. I had a similar event to yours, it started with a small flare up on my face and neck in Dec. 2018. I had redness and itching. I used intense moisturizers and it went away after a few weeks. However I did have a low degree of redness in other areas for 2 months after that. In March 2019 hives spread over my entire body and my skin was very dry, I started using benadryl orally and also a topical lotion containing benadryl. It was not helping so I tried 3 other antihistamines treating it as some kind of allergic reaction. It got so bad I went to urgent care when it spread inside my mouth and swelling in my throat. I was told it was just an allergic reaction and it just needed to run it’s course. She did not offer any medication. I continued using anti itch lotions or sprays on the worst areas, even Almay sensitive skin products would actually burn my face. I went to castille bar soap, moisturizing anti itch lotions or sprays. It continued until July when I visited a “fibro specialist” 4 hours from home. I was put on Rayos(time released prednisone), after one month my skin improved. I would say 95% of the hives and itching stopped. My allergist felt it was due to severe anxiety that I have trying to cope with all the fibro companion ailments. I was put on the Rayos for inflammation caused by fibro, it was not for the severe skin problems I had. If you have any specific questions I will be happy to answer them if I can.

There is a condition known as chronic urticaria that’s an autoimmune condition. There’s a Facebook page for sufferers. I know about because I have a friend who has dealt with this condition for years.
Best wishes; I hope you get a diagnosis and treatment that works for you.

Thanks to everyone for your input. I have a rheumatologist who I see once a year or so. She seems to mostly want to prescribe pain meds which I don’t want. I am allergic to all sulfa drugs and I saw my allergist who tested me for about 50 things. I’m not allergic to much but mold and tree pollen. We had our house checked for radon and mold a few years ago and it’s clear. Fortunately not cat’s or dogs as I have one of each. What’s really strange about this rash is it’s mostly on one side. My right leg and arm. I’m going to see my dermatologist in a week so I’m going to take notes on everyone’s input and see what she says. I will keep in touch. Thanks again for all the advice!

I had an incident a year ago following my beautician highlighting my hair (same product she always used). It started with extremely itchy scalp within the hour. My dermatologist gave me medicine for scalp which helped tremendously, but then the hives spread over my body. I had prednisone…no response, cortisone cream in 1# tubs…little response. I was taking double Claritin plus Benadryl orally before it resolved after about 2 months. My dermatologist suggested it was a histamine reaction and doubling up on the antihistamines out of desperation was a good thing. No more hair color for me, but no more hives.

I’ve been taking Zyrtec and alternating with Claritin forever since I have allergies. This is getting so frustrating since I can’t stop taking my heart medications to see if that’s what’s causing my problem. The dermatologist recommended the Zyrtec during the day and Benadryl at night. Wouldn’t it be crazy if I’m allergic to the allergy meds? I’m really hoping the blood work I had today will tell if there’s something else going on. I noticed tonight I have redness to my skin all over. Really, really discouraged since this has been going on so long. Thanks so much to everyone just for listening!

As a retired Derm nurse, I’m glad you’re going to see the Derm… the best course of action for this ( in my professional opinion) is to request patch testing The Derm can explain the process, and yes, it’s covered by insurance! Don’t worry about or focus on what meds are causing this… it could very well be that’s not the cause at all. Patch testing will check you for something like 70 known allergens. You’d be suprised what these tests have shown us/our patients: a 25 year career banker who became allergic to MONEY! -was one that stands out… nickel, which you wouldn’t believe how many everyday things contain it- is another common find. Neomycin (aka Neospirin ointment) was actually voted ALLERGEN OF THE YEAR some years back. Lol… so again, I encourage you to request patch testing, which is typically only done by dermatologists.
Good luck!

Thank you so much for the information! I’d never heard of that being available from the dermatologist. I will be seeing her in a few days. The last punch test said it was medication induced but this is a different type of rash and I really need to know what’s causing it since I can’t stop my Afib medication or blood thinner to find out if it’s them. Considering everything itches even my head it must be something I’m ingesting I would think. Thanks again for the information!

Reading about your hives and all the responses here I am more convinced that FMS is a brain disease- in the respect that the simplest things seems to trigger the oddest reactions. Sometimes I can make the connections to a “trauma” but most times not. And I use “trauma” to cover any event in life. I can get a scratch on my arm and it can debilitate my whole arm- FMS seems to magnify everything that happens to me and I wonder if others may see that connection as well. I’ve explained it as an echo from the trauma (however big or miniscule) but really I just want a cure- like all of us, I’m sure.
I hope your rash gets resolved <3

tom girl,
You are definitely accurate in your response to my issues. When you have FMS your body seems to overreact to every change or new event in your life. Every time I’m prescribed a new medication I’m paranoid that I’m going to have a negative reaction.
I had to move my Mom into assisted living back in August and I managed to do most of it myself and felt fine but once it was over I felt like I was falling apart. Developed something called Meralgia Paresthetica in my right hip. Basically a pinched nerve that won’t go away. I wish that more research was being done on this disease because there are so many of us who suffer from FMS than ever before. Thanks so much for your input!

Bookjunkie, welcome back! Isn’t it nice to have a place where you know that you can get support and kindness just … well, just because we are here for each other?

Let me say one thing: it is not in your head. And you are not weird just because your doc can’t figure you out. OK, that’s two things.

A suggestion: take pictures of your rashes and go see a dermatologist.

Hugs for you: it’s hard, but you can work through it for answers. And you know where to come for support.

We’re glad you’re back.

Seenie from ModSupport

It’s good to be back with people who always know what you’re going through and don’t discount it all as in your head! I did see my dermatologist yesterday and asked about patch testing as Kelly suggested. She will be doing that if necessary next month after all my previous meds are out of my system. In the meantime the rash is slowly improving and she also suggests I see my allergist for food allergy testing. I do miss taking my turmeric supplement daily. It seemed to help with inflammation and I can tell I’m not taking it since I seem more painful than usual. I’m just so curious what may have caused the rash and I’m not very patient with not knowing what it was.
Thanks again for all your advice!